How to get what we need at the end of life

By Diane E. Meier

MY PATIENT – I’ll call her Mrs. Stein — had been crystal clear for the 12 years I took care of her. “I never want to end up in a nursing home — make sure you help me stay in my own home. I want to die in my own bed!”

A few years later, she had a stroke and her only option was a nursing home. She didn’t have enough money to pay out of pocket for 24-hour personal care at home, and neither Medicare nor Medicaid would cover it. Angry and depressed, she left for a neighborhood nursing home, where she lived another five years. I knew her wishes, but our society provided no means of honoring them.

In order to know what our patients prize most, we need to ask them, and then we must be able to act on what we learn. This requires three key elements.

First, we have to help clinicians and their patients get off the 10-minute office visit treadmill, by compensating providers for conducting meaningful conversations with patients about their priorities and treatment options. Recent government effort to provide payments to clinicians for having conversations about what matters most to our patients if they can no longer decide or care for themselves (referred to as advance care planning) is an important step in wrestling our health care system back to one that places patient needs and priorities first.

Second, these are not easy conversations to have. Clinicians are not born knowing how to have them, and just like our patients, we avoid discussions about uncomfortable topics. Meanwhile, talking about future medical priorities is not taught in medical schools. Until this kind of training is routine and universal, it does not matter whether or how much we pay for these conversations; clinicians will continue to avoid them. The good news is that a bill in Congress, the Palliative Care and Hospice Education and Training Act, addresses these issues.

But third, it is not enough to know what patients want. We must also be able to act on those wishes by covering the care and support people need in order to remain as independent as possible in their own homes. While the Care Choices Act represents some progress, as it allows people to get hospice care at home focused on comfort and quality of life at the same time as continued disease treatment, it does not cover the personal care and support. But there is hope here, too — the Affordable Care Act creates new incentives for our health systems to help us avoid unnecessary, risky, and costly hospitalization, incentives that will drive greater willingness on the part of both public and private insurers to meet people’s needs in their own homes. That’s a lot cheaper than having people end up in hospitals and nursing homes. It is also what most of us — including Mrs. Stein — would want.

Dr. Diane E. Meier is a palliative medicine physician and director of the Center To Advance Palliative Care at the Icahn School of Medicine at Mount Sinai in New York City.